Come inside and check out the incredible nationwide impact ALF made in 2022.
IMPACT
2022 REPORT
August 2023
Dear ALF Friend, This past year was another transformational year for American Liver Foundation (ALF). Building upon the growth, learnings and successes of 2021, we went into 2022 with a comprehensive plan focused on improving patient lives, increasing public awareness of liver disease and advancing early diagnosis, new treatments and cures. A few highlights you will learn more about in the pages that follow include: Launching our five-year nationwide public health initiative, Think Liver Think Life™, in the first ten states, which created hundreds of new partnerships and screening opportunities. Our goal is to ensure that every American understands their risk for liver disease, receives the appropriate diagnostic testing and care coordination and feels well-informed and supported throughout their liver journey. Extending our reach by collaborating with organizations such as the American Diabetes Association (ADA) and Meijer Specialty Pharmacy to bring awareness to liver disease and its relationship to other health conditions such as obesity and diabetes. Creating a "Life with Biliary Atresia (BA) and Beyond" Facebook Support Group for pediatric patients and their families, featuring a quarterly educational webinar series with experts in BA, nutrition and more. We hope you enjoy learning about the impact ALF made on the lives of the 100 million Americans affected by liver disease last year. As always, thank you for your continued support – it is only through the generosity of our donors that we are able to fulfill our mission and one day reach our goal of a world free from liver disease. Sincerely, Hosting Liver Life Walks and Liver Life Challenge events in-person at locations across the country, bringing back a sense of community among liver patients, friends, families and more. Launching a new brand and refreshed website to better serve our growing patient community. Advancing living donor liver transplant by convening new partnerships with thought leaders and experts in liver transplantation, patients and families to discuss a different approach to increasing the number of, and access to, living donor transplants, breaking down barriers, utilizing information learned from successes in living kidney transplantation and encouraging innovation.
Dan Weil Chair, National Board of Directors
Lorraine Stiehl Chief Executive Officer
IMPROVING PATIENT LIVES Patients are at the heart of ALF’s mission and improving patient lives is our top priority. From launching a five-year, nationwide public health screening and awareness campaign, Think Liver Think Life™, to offering free patient programs, educational resources, clinical trial information, and helpline support services, ALF is the trusted voice for patients, families and caregivers every step of the way.
The rise in obesity and diabetes in the U.S. is fueling a little understood yet life-threatening disease known as fatty liver disease, which affects an estimated 80-100 million people, many of whom are unaware they even have it. To help address this public health crisis, ALF announced a nationwide public health initiative which included screenings and an awareness campaign, Think Liver Think Life, to test at-risk children and adults in all 50 states over the next five years.
2022 States
Alabama, Arizona, Florida, Kentucky, New Mexico, New York, Ohio, Pennsylvania, Texas, West Virginia
Thank You 2022 Founding Sponsors AstraZeneca Premier Sponsor Gilead Campaign Sponsor Fibronostics Premier Diagnostic Partner Mallinckrodt, Merck, Pfizer Supporting Sponsors
ARE YOU AT RISK? In October 2022, we launched a simple liver health quiz to help people find out if they’re at risk for fatty liver disease and what to do next.
1,000 People completed the quiz between October 1 and December 31, 2022
800 Individuals screened by Think Liver Think Life partners
62% Of people screened had some indication of fatty liver disease
UNDERSTANDING PATIENT RIGHTS
In collaboration with the Hepatitis B Foundation, patients, medical professionals and other key stakeholders, ALF held a Hepatitis D Roundtable to identify the unmet needs of people living with the hepatitis D virus (HDV). A Patient Bill of Rights will be created to better support and engage people in hepatitis D management and to open lines of communication between patients and doctors to prioritize liver health. Hepatitis D Roundtable Rare Liver Disease Summit ALF held a two-day virtual Rare Liver Disease Summit in which patients, medical professionals and other key stakeholders worked on identifying solutions to improve the health outcomes of those affected by rare liver diseases. A Patient Bill of Rights was created to help patients achieve earlier diagnosis and understand how to avoid misdiagnosis, increase knowledge of genetic testing, address stigmas and improve the overall patient experience.
ADVANCING LIVER TRANSPLANT ALF is committed to advancing living liver donation so that everyone who needs a liver transplant has an opportunity to receive one. Liver transplant experts from leading medical institutions gathered throughout the year to brainstorm innovative ideas to increase living donor liver transplants, break down barriers and utilize information learned from the success of living kidney transplantation.
During the 2022 Transplant Games in San Diego, ALF convened a patient and caregiver workgroup to identify the difficulties they face with transplantation to help us address gaps. Helping families understand living liver donation is key, which is why we developed a new, five- part animated video series to help patients find a living donor. A complete toolkit with educational information and resources for donors and recipients can also be found in our Living Donor Liver Transplant Information Center. THE EDUCATED PATIENT: A LIVER CANCER CONFERENCE Hundreds of patients, caregivers and family members registered for the third annual The Educated Patient: A Liver Cancer Conference Presented by Exelixis. The two-day virtual conference included presentations, workshops and opportunities to engage with leading medical, nutrition and research experts about issues most relevant to those affected by liver cancer. Topics included:
Liver Disease Screening Treatment Types Managing Medications Liver Cancer Prevention and Control How to Navigate Clinical Trials Breakthroughs in Liver Cancer Research Transplant
PEDIATRIC LIVER DISEASE INFORMATION CENTER
MILLION 100
Americans affected by liver disease
For families struggling with pediatric liver disease, few resources and support options existed, until now. Our Life with Biliary Atresia & Beyond Facebook Support Group helps pediatric patients and families meet new people, share stories, ideas and form bonds that will last a lifetime. The group meets quarterly for a Life with Biliary Atresia Webinar Series featuring experts on topics such as the Kasai procedure, transplant, support services, nutrition and more.
people helped through health info, education and support services MILLION 4.3
POWERFUL PARTNERSHIPS In 2022, ALF joined forces with two major partners to present educational webinars to the liver community and beyond.
in ALF social support groups MEMBERS 50,000
What You Need to Know: Diabetes and Protecting Your Liver
ALF joined forces with the American Diabetes Association (ADA) to present this educational webinar focused on the connection between fatty liver disease and type 2 diabetes. The livestream event offered an expert panel discussion and a community Q&A session which attracted more than 1,100 registrants.
Promoting Think Liver Think Life PARTNERS 200
Living Well with Liver Disease More than 350 people registered for this hour-long virtual educational program, held in collaboration with Meijer Specialty Pharmacy, which focused on topics ranging from general liver disease, hepatitis C, fatty liver disease, nutrition and more.
LEND YOUR VOICE CAMPAIGN ALF’s Lend Your Voice campaign encouraged passionate volunteer advocates to meet with their local elected officials during July and August while they were home in their districts for summer recess. Advocates shared their liver stories and urged action for better treatments, lower cost prescriptions, protections for living donors, increased public awareness and investment in liver research. There is nothing more powerful than a person’s own story.
RAISING PUBLIC AWARENESS OF LIVER DISEASE
Raising awareness about liver disease and the importance of liver health is key to achieving our vision of a world free from liver disease. From a nationwide public awareness campaign to hosting community Liver Life Walks and Liver Life Challenge events across the U.S., ALF is committed to bringing liver health and disease prevention to the masses.
As part of Think Liver Think Life, ALF worked with each of the first ten states to raise awareness during the month of October, National Liver Awareness Month. We held ‘Liver Day’ awareness events to bring together liver patients, families and local legislators to discuss the importance of liver health and wellness. We also worked to secure city proclamations and light cities green! LIVER HEALTH AWARENESS & LIVER DAYS
ALF BRAND REFRESH
We're sure you've noticed our new look by now. Thanks to the generous donation of time, talent and resources by ALF national volunteer leadership, ALF's brand received a complete overhaul last year. A new logo, color palette and website work in tandem to convey two simple yet powerful concepts:
The importance of truly "living" one's best life during every stage of their liver journey The power of the "next step" toward liver health.
Read more about our transformation, its meaning and the incredible volunteer talent behind it, here.
MILLION 15
Steps taken by Liver Life Walk participants
Liver Life Challenge is ALF’s official endurance program, where dedicated athletes from across the country use their passion and commitment to go the extra mile for the liver community. Liver Life Challenge participants ran in the Boston, Chicago and New York marathons, cycled in NYC’s Five Boro Bike Tour and Arizona’s El Tour de Tucson and hiked, swam or walked 30 miles in 30 days.
MILLION $1 Raised through Liver Life Challenge Events
MILES 13,000 tracked at Liver Life Challenge events
Liver Life Walks made an in-person return in 2022. In addition to our Virtual Liver Life Walk held in the Fall, ALF hosted 11 in-person events across the country. Thank you to the 2,000 people who were able to attend both in-person and virtually.
ALF’s New England Legacy Gala was held on May 5th and honored Jay Luly, Ph.D., President and Chief Executive Officer of Enanta Pharmaceuticals and Thomas E. Sepe, MD, Partner at University Gastroenterology in Providence and Clinical Professor of Medicine at Brown University, for their contributions to the liver community through research, biopharmaceuticals and education. NEW ENGLAND LEGACY GALA
24 IN-PERSON
Liver Life Walk and Liver Life Challenge events took place
5
Raising over $900,000, our second annual National Legacy Gala held on October 13, 2022 gathered patients and families, thought leaders, leading medical professionals, business visionaries and organizational partners in the healthcare, pharmaceutical and biotech industries to recognize four distinguished Awardees - Donald Jensen, MD, Susan and Michael Kerr and Allan Wolkoff, MD - for their outstanding and continued impact on the liver community.
EARLY DIAGNOSIS, TREATMENT AND CURE
Promoting early diagnosis and treatment of liver disease involves educating both the patient and the physician. While our nationwide public health initiative, Think Liver Think Life™ focuses on educating at-risk patients, ALF also offers robust education, resources and networking opportunities for thousands of healthcare professionals nationwide.
ALF’s weeklong Academic Debate Madness was held March 28-April 1. This professional educational event featured 28 teams, 60 debaters and 21 unique topics in liver disease. For the past 18 years, ALF has provided those new to the liver field an opportunity to engage with peers and learn directly from specialists on key topics critical to liver disease management and care. To view the winners from each category, click here. ACADEMIC DEBATE MADNESS
The 31st annual Irwin M. Arias Symposium, Bridging Basic Science and Liver Disease was held on November 10th. This one-day virtual event attracted over 500 leading biomedical scientists and physicians from across the globe. Designed to bridge the remarkable advances in basic biology and engineering with the understanding of liver diseases and their treatments, this event is one that basic, translational and physician scientists look forward to every year. IRWIN M. ARIAS SYMPOSIUM
David E. Cohen, MD, PhD, Professor of Medicine and Chief of Gastroenterology, Hepatology & Endoscopy at Brigham and Women's Hospital was ALF’s 2022 Distinguished Scientific Achievement Awardee. Dr. Cohen was recognized for his extensive research on the pathogenesis of nonalcoholic fatty liver disease, which is now being used to develop new treatments for nonalcoholic fatty liver disease (NAFLD), nonalcoholic steatohepatitis (NASH) and other liver disorders. DISTINGUISHED SCIENTIFIC ACHIEVEMENT AWARD
The last few years have been tough on all of us, especially medical professionals experiencing burnout. For Mental Health Awareness Month in May, ALF held a webinar with Claudine Holt, MD, MPH, Occupational Medicine Physician and Certified Life & Embodiment Coach at Mount Sinai Hospital in New York City, focused on ways to prioritize mental health and recover from burnout. LIFE BEYOND BURNOUT MOCK LIVER CANCER TUMOR BOARDS Over 40 medical professionals joined our East and West Coast Mock Liver Cancer Tumor Boards. Both programs reviewed patient selection, surgical techniques, prognosis, and more to educate a variety of medical providers about the latest innovations in liver resection and tumor removal.
FINANCIALS
TOTAL REVENUE & PUBLIC SUPPORT
$5,351,877
TOTAL ASSETS $8,657,364
PROGRAM SERVICES
$3,157,189
Community Services 25.4%
Public Education 29.6%
Research 2.6%
Patient Services 26.7%
Professional Education 15.7%
SUPPORT & PROGRAM EXPENSES
$4,241,350
Fundraising 12.5%
Management 13.1%
Program Services 74.5%
2022 NATIONAL BOARD OF DIRECTORS
Daniel E. Weil, National Board Chair Highwood, IL Mike Braunstein Boston, MA Rotonya Carr, MD Seattle, WA Eugene “Gene” Cautillo, PhD Holmdel, NJ Peter Cullen San Francisco, CA Constance "Connie" Deneweth Traverse City, MI Nicholas J. DeRoma New Canaan, CT
Kevin Lee St. Louis, MO Elizabeth Leesmann Portage Des Sioux, MO Richard J. Miller, Jr. New York, NY Thomas F. Nealon, III Miami, FL Robert Pollichino Northport, NY Ellen Rucker Sellers Charlotte, NC Nicole Smith, PhD
Bainbridge Island, WA Susan Sherman Stone Hingham, MA Emmanuel Thomas, MD, PhD Miami, FL Hillel Tobias, MD, PhD New York, NY Deborah Tully, Treasurer Boston, MA
Allan J. Doerr Marmora, NJ
David Frank Hoboken, NJ Anne Chapski Doyen Elgin, IL Carlo Frappolli, Secretary Delray Beach, FL Michael Kerr Woodsburgh, NY
Rockford Yapp, MD Downers Grove, IL
2022 LEADERSHIP TEAM
Lorraine Stiehl Chief Executive Officer David Ticker Executive Vice President & Chief Financial Officer
Heidi Daniels Vice President, Development
Kelly Smith Vice President, Events
Julie Kimbrough Chief Marketing, Communications & Public Affairs Officer
2022 CORPORATE COUNCIL
GOLD MEMBERS
SILVER MEMBERS
BRONZE MEMBERS
AMERICAN LIVER FOUNDATION PO BOX 299 | WEST ORANGE, NJ 07052 1-800-GO-LIVER INFO@LIVERFOUNDATION.ORG LIVERFOUNDATION.ORG
The American Liver Foundation is a 501(c)3 nonprofit organization.
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